Siblings of People with Disabilities: Building Awareness and Support through LEND Nathan AUCD Presentation November 6, 2017

Fran Goldfarb, MA, MCHES, CPSP Panelists Nathan Grant President and Founder of Siblings with a Mission Harvard College, Molecular and Cellular Biology Katie Arnold, MS Executive Director of the Sibling Leadership Network University of Illinois at Chicago Barbara Levitz, MS Ed Director of Family Partnerships Training NY LEND & UCEDD/Valhalla Fran Goldfarb, MA, MCHES, CPSP Director, Family Support USC, Children’s Hospital, UCEDD/LEND

Overview The Health and Wellbeing of Siblings LEND Sibling Curriculum Siblings as Family Trainees in LEND Feedback & Questions Nathan

Life Course Activity: The Needs and Challenges That Siblings Experience Activity in Sibling LEND Curriculum Chart needs of siblings during childhood, adolescence, and adulthood Determine what professionals can do to offer support Objective: Identify the needs and challenges siblings may face across the life course; recognize what the group knows By identifying needs, we can develop proper support systems Katie (explanation) and Nathan (type on slide) (10 minutes)

Health and Wellbeing of Siblings: Childhood Needs and Challenges What Professionals Can Do Group Suggestions: Group Suggestions:

Health and Wellbeing of Siblings: Adolescence Needs and Challenges What Professionals Can Do Group Suggestions: Group Suggestions:

Health and Wellbeing of Siblings: Adulthood Needs and Challenges What Professionals Can Do Group Suggestions: Group Suggestions:

Relevance of Group Activity Demonstrates what group knows about the needs of siblings Highlights importance of raising awareness of siblings’ needs Curriculum will inform about: Needs of siblings across the life course How professionals can support siblings during various life stages

The Sibling Relationship Siblings have longest relationship Sibling experiences are often overlooked Siblings have a peer perspective Katie— The majority of people with I/DD live with their families 25% of family caregivers age 60+ Greater numbers of adults with I/DD now outlive their parents Siblings often are the successor caregivers but their current involvement varies

The Health and Wellbeing of Siblings: The Psychosocial Needs Feelings include sorrow, anger, jealousy, guilt, and confusion Common challenges: communicating feelings with parents and others, concern for future and health of brother or sister, and distress from reactions of strangers1 Siblings often feel alone in their experiences Siblings become the long-term caregivers for their brother or sister with a disability2 Pit-Ten Cate, I. M., & Loots, G. M. 2000 Holl, E., & Morano, C. L. 2014.

Ethnographic Research Findings Show Need for Support There is a need for support for siblings across the life course Support should include themes of accessing disability-related information, providing support for caregiving, and enhancing the formal support system to address sibling needs1 Support should be at an integrated level that involves parents, family members, and health care professionals from multiple fields Siblings who have greater access to support services experience greater wellbeing and ability to care for their brothers and sisters with a disability2 Arnold, C. K., Heller, T., & Kramer, J. 2012. Holl, E., & Morano, C. L. 2014.

Sibling LEND Curriculum Objectives: Identify the life course experiences of siblings of individuals with disabilities Identify common positive and negative psychosocial impacts of having a brother or sister with a disability List at least 5 support needs of siblings of people with disabilities Explain ways professionals can support siblings and families to plan for the future. Recognize the impacts that may result from various methods of sibling support Nathan

Curriculum Overview: 4 Topics for knowledge acquisition 1. The Sibling Experience: Across the Lifespan Young Siblings Teenage Siblings Adult Siblings Diagnosis-Specific Experiences Grief Support Note: All sub-sections include the following information: Research Articles and Guidelines Books Video Clips Katie (explain layout for each unit)

Curriculum Overview (cont.) 2.How Professionals and Support Groups Can Help Siblings Acknowledging and Addressing the Needs of Siblings The Impact of Support Groups for Siblings   How Health Care Providers Serve Siblings: Support in a Medical Setting Teamwork  The Power of Advocacy and Resilience: A Sibling’s Unique Story Can Make A Difference Katie

Curriculum Overview (cont.) 3. Resources 4. Importance of Long-Term Networks of Support The Support Needs of Adult Caregivers   Important Policy Information for Siblings How to Connect Siblings to Support Groups How to Establish Networks of Support Katie

LEND Activities Interactive Group Activities Group Discussions Self-Reflections Case Study Writing Assignments Movie and Video Discussions Objective: Assess and apply understanding of the life course experiences of siblings, and identify how to offer support to siblings during various life stages Nathan

Example of a Case Study Writing Assignment Read a story about a teenage sibling Identify and write common emotions and challenges that the sibling discusses in her story Compare and contrast with an article Describe ways support groups and professionals can help this sibling

Importance & Impact of Sibling Curriculum To ensure professionals are prepared to include siblings in their work with people with disabilities and families To provide knowledge and resources that professionals can use in their work with families so siblings can receive more support throughout the lifespan To encourage professionals to view siblings as partners in the journey to ultimately improve outcomes for people with disabilities throughout their lives. Nathan

Including Siblings as LEND Trainees and a Sibling Issues LEND Session 11/17 Including Siblings as LEND Trainees and a Sibling Issues LEND Session Barbara Levitz, MS Ed Director of Family Partnerships Training NY LEND & UCEDD/Valhalla Faculty-New York Medical College Blevitz@wihd.org BLevitz@wihd.org

Siblings as LEND Trainees Goal: 1 sibling each year as a designated Family Discipline Trainee Usually 2-3 LEND Trainees from other disciplines who are siblings (PT, SLP, Genetics, OT, Social Work) Parent Family Discipline Trainees are sometimes siblings, too.  

Recruitment of Siblings as LEND Trainees Constant contact blurb and a flyer Outreach: LEND Graduates…Family Support Networks…Sibling Groups… Independent Living Centers… Colleges…Disability Agencies… Community Advisory Committee  

Siblings Recruitment Resources SibsNY is the NY state chapter of the National Sibling Leadership Network (www. Sibsny.org) www.siblingresources.org A grant project funded by the New York State Developmental Disabilities Planning Council  

Sibling Trainee Presentation Family Quality of Life & Advocacy Part 1: Sibling’s disability Family interactions Advocacy Access to natural supports & formal services Family, school and community inclusion

2) A “typical” day for your family 3) A discipline most helpful to your family and how? 4) What you would want professionals to know when interacting with siblings Submit PowerPoint presentation slides Complete a post-presentation self- assessment form for family faculty feedback/evaluation

Sibling Issues LEND Session Reading: A sibling’s senior speech to 9th & 10th graders (2017) Facilitated sibling panel discussion Family Faculty share key thoughts of their sibling family members

Handout Materials What Siblings Would Like Parents and Service Providers to Know- Sibling Support Project Resources for Siblings of Children and Adults with Disabilities- YAI 2015 Sibling Policy Brief- Sibling Leadership Network

Panel Participants Guest siblings from the community Current and invited former LEND Sibling Family Trainees Current LEND trainees from other disciplines who are siblings and Parent Family Trainees who are also siblings

Sibling Panel Topics Everyday life growing up with a sibling with developmental disabilities Positive and challenging aspects for you as a brother or sister Participation in a group that supports siblings of individuals with special need? If so, did you find it helpful and why?  

More Sibling Panel Topics Impact of your sibling experience now and what the impact may be in the future Key points that parents and professionals should know about how to better support siblings of individuals with developmental disabilities Additional questions from trainees  

The Sibling Issues session is an important part of the LEND Family Partnerships Curriculum Training Module at WIHD Siblings as LEND Family Trainees is a highly impactful aspect of the LEND program experience for all trainees

Siblings in LEND Programs Fran Goldfarb LEND Family Discipline Network

Introduction Family as Discipline First “officially” recognized in a meeting co-sponsored by AUCD and MCHB in 2005, but involving family members as trainees started earlier The LEND Family Faculty Work Group emerged From the beginning, the Work Group was (and remains) focused and active. Some examples: Developed original guidance documents for LEND Family Faculty Collaborated with other MCHB-sponsored training programs on family involvement Developed other guidance, including scholarly articles and technical assistance documents Presented at national meetings on family as discipline and related topics

LEND Trainee Recruitment Survey In 2015, the network conducted an informal survey to determine Definition Qualifications Recruitment Strategies LEND Involvement

Definition of a Family Discipline Trainee No universal definition 3 common factors Parent/family member of a person with a disability Lived experience Advocacy/Leadership experience No universal definition other than Parent/family member Some include educational requirements, Some include self-advocates Some require paid or unpaid professional experience providing family support or give preference to those planning to work in the disability field

Eligibility

Siblings in CA-LEND Fran D. Goldfarb, MA, MCHES, CPSP Director, Family Support CA-LEND (USC) Los Angeles, California

Siblings in CA-LEND Goal Goal Family Support Discipline Pediatrics Discipline

Family Support Discipline

Fran Goldfarb fgoldfarb@chla.usc.edu 323 361-3831

Thank You For Listening! Any Questions? Thank You For Listening! All images are from Google Images and are intended for use for educational purposes